Resources for People with Peripheral Neuropathy
Prepared by:
Joseph Malkevitch
email:
malkevitch@york.cuny.edu
web page:
http://york.cuny.edu/~malk/
What is Peripheral Neuropathy?
Peripheral neuropathy (sometimes neuropathy for short) is a family of diseases of the nervous system which often display similar symptoms (numbness in toes and/or fingers, burning sensations, tingling in the toes, balance problems, pain in the feet, fingers, and arms, etc.) but which have many causes (e.g. diabetes, genetic, viruses (including HIV infection), toxic substances (including the taking of medicines for otherwise beneficial purposes), alcoholism, Lyme disease, celiac disease, etc.).
Collected below are resources for people who are trying to cope with having neuropathy. I have not always examined all of the items below nor is it claimed that this constitutes a complete or authoritative collection of resources. However, it does provide an entry point for people with neuropathy to be aware of the nature of their disorders and to be "educated consumers" while working with medical professionals.
Two very good places to get started are these materials assembled by the National Institutes of Health and the Cleveland Clinic (somewhat more technical than NIH):
Intoduction to Neuropathy
https://www.ninds.nih.gov/health-information/patient-caregiver-education/fact-sheets/peripheral-neuropathy-fact-sheet
Peripheral Neuropathy
http://www.clevelandclinicmeded.com/medicalpubs/diseasemanagement/neurology/peripheral-neuropathy/
Causes of Neuropathy
Although there are many causes of neuropathy, among the most common are those below. Some pointers to surveys about information regarding these types of neuropathy are also given:
Diabetes (and alcoholism)
Diabetic neuropathy
https://www.niddk.nih.gov/health-information/diabetes/overview/preventing-problems/nerve-damage-diabetic-neuropathies
Diabetic neuropathy
http://www.diabetes.org/living-with-diabetes/complications/neuropathy/
This information is put together by the American Diabedes Association. You might want to look at the checklist. Even people who have not been diagnosed as having diabetes may it appears get nerve damage from problems with their sugar metabolism.
Hereditary causes
Essay about hereditary neuropathy and Charcot Marie Tooth
http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=gene&part=cmt
Adult Polyglucosan Body Disease
http://ghr.nlm.nih.gov/condition/adult-polyglucosan-body-disease
Essay about hereditary sensory neuropathy
http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=gene&part=hsn1#hsn1
CIDP (Chronic inflammatory demyelinating polyneuropathy)
CIDP is a common "catch all" description of people who have "neuropathy" problems tied to immune system issues which can have varied causes.
CIDP (Chronic Inflammatory demyelinating polyneuropathy)
http://www.ninds.nih.gov/disorders/cidp/cidp.htm
Lyme disease
People who live on Long Island, especially those who are out of doors a lot on Eastern Long Island run the risk of getting Lyme disease, which is caused by a bacterium and transmitted by ticks.
Lyme Disease
http://www.cdc.gov/Lyme/
Neuropathy, medicines and toxins
Neuropathy and Medicines
Some people develop neuropathies due to chemotherapy for cancer. Others claim that taking particular medicines have caused their neuropathy or made it worse. It is often hard to sort out the cause of a neuropathy because one may have symptoms that are related to more than one cause.
http://www.nlm.nih.gov/medlineplus/ency/article/000700.htm
This detailed list has examples of "toxins" that cause neuropathy, with lots of details!
Neuropathy and toxins
http://neuromuscular.wustl.edu/nother/toxic.htm
Gluten and Celiac Disease
Some people who have troubles with gluten sensitivity or celiac disease develop neuropathies.
Gluten Sensitivity and Celiac Disease
http://www.celiaccentral.org/Celiac-Disease/21/
Living with Neuropathy
A variety of general sources of information are available at these sites:
Living with Neuropathy
https://www.foundationforpn.org/livingwithperipheralneuropathy/additionalresources.cfm
Testing and Diagnosis
Here is a "rubric" for trying to diagnosis what kind of neuropathy one might have:
Diagnosis rubric
https://neuromuscular.wustl.edu/naltbrain.html
In order to diagnose neuropathy and/or to try to pin down a particular cause, a variety of tests may be suggested. Here is some information about what tests are often carried out, and what the purpose of these tests is:
Neurological testing
http://millercenter.uchicago.edu/learnaboutpn/evaluation/neuroexam/index.shtml
In trying to diagnosis if a person has a neuropathy sometimes an EMG and/or a nerve conduction test is indicated.
EMG testing
https://www.mayoclinic.org/tests-procedures/emg/about/pac-20393913
Nerve conduction testing
https://en.wikipedia.org/wiki/Nerve_conduction_study
When no cause of neuropathy can be identified, sometimes the symptoms are treated. For some people this is successful and for others not.
Survey Articles
Two wonderful survey articles about neuropathy are:
1.
An Algorithm for the Evaluation of Peripheral Neuropathy
(This is on the site of the American Academy of Family Physicians.)
http://www.aafp.org/afp/980215ap/poncelet.html
2.
Peripheral Neuropathy
http://medjournal.com/volume6/num1/neurop/article.htm
Pain Management
While many treatments of peripheral neuropathy deal with pain management here is a nice "summary" article about this issue:
Neuropathic Pain
http://http://cmt.org.uk/about-cmt/managing-cmt/pain/
Some people develop neuropathy as a consequence of the chemotherapy they take to treat cancer. This technical article addresses some of the issues here.
Neuropathic Pain from Cancer
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4000251/
Helpful Short Summary "Articles"
Brief Introduction and Diagram of Nervous System
http://www.foundationforpn.org/livingwithperipheralneuropathy/index.cfm
Popular books about Peripheral Neuropathy
Berman, S., Coping with Peripheral Neuropathy, iUniverse Inc., Lincoln, Nebraska, 2007.
Latov, N. Peripheral Neuropathy, American Academy of Neurology, 2007.
Cushing, M. and Latov, N., You Can Cope With Peripheral Neurapathy, DemosHealth, New York, 2009.
Parker, J. and P. Parker, (eds.) Peripheral Neurapathy, ICON Health Publications, San Diego, 2002.
Senneff, J. A., Numb Toes and Aching Soles: Coping With Peripheral Neuropathy, Med Press, 1999, Halifax.
"Neurology 101 - Sources of Introductory Ideas about Neurology"
Introduction to the Brain and Nervous System
https://www.unibs.it/sites/default/files/ricerca/allegati/Brain%20Facts_A%20primer.pdf
Glossaries
To be able to understand some of the technical articles about neuropathy it is often necessary to recognize some technical terms from medicine in general and neurology in particular. Here are some glossaries that will help you understand what you will see.
Neurology Glossary
http://www.umm.edu/nervous/glossary.htm
This glossary (hosted by the National Library of Medicine) is a very rich one but has the disadvantage that one first has to select the letter of the word one wants and then locate that word to get to its definition:
Neurology Glossary
https://www.neurological.org.nz/resources/glossary
This glossary is focused on words related to those who have had a stroke.
Neurological terms glossary
Neurological surgery glosssary:
Neurological surgery glossary
http://www.aans.org/Media/Glossary-of-Terminology
Bulletin Boards
There are also bulletin boards devoted specifically to pain management issues, something that people with neuropathy often are concerned with.
If you are interested in finding a support group in NY you can find the information here:
Support Groups
https://www.foundationforpn.org/living-well/support-groups/
On the page of support groups above, click on N for New York State and scroll down for New York support groups.
Neurotalk Community
There are active discussions for neuropathy sufferers on "Neurotalk."
http://neurotalk.psychcentral.com/forum20.html
A site which provides lots of information about all aspects of neuropathy is:
Neuropathy Support Network
https://neuropathysupportnetwork.org/
Technical books about Peripheral Neuropathy
Dyck, P. and P. Thomas, E. Lambert, R. Bunge (eds.), (2nd edition), Peripheral Neuropathy (Volumes I and II), W. B. Saunders, Philadelphia, 1984.
Schaumburg, H., and A. Berger, P. Thomas, Disorders of the Peripheral Nerves, Second Edition, F. A. Davis Company, Philadelphia, 1992.
Veves, A., and R. Malik, Diabetic Neuropathy, Second Edition, Humana Press, 2007.
Journals dealing with Neurology
Many of the journals below are designed for medical researchers, doctors, and other experts; however, it may be useful to look at survey articles on neuropathy.
Nature Magazine has a moderate number of articles about basic research in the area of neurology but it also publishes a specialized journal in the area of Neuroscience.
Nature Neuroscience
http://www.nature.com/neuro/index.html
Nature Clinical Practice Neurology
http://www.nature.com/nrneurol/archive/index.html
Archives of Neurology
http://archneur.ama-assn.org/
BioMed Central is involved with a large variety of journals. Two that involve neurology appear below. For both, links to an archive and a current issue are given.
BioMed Central Neurology (Archive)
http://www.pubmedcentral.nih.gov/tocrender.fcgi?journal=48&action=archive
BioMed Central Neurology
http://www.biomedcentral.com/bmcneurol/
BioMed Central Neuroscience (Archive)
http://www.pubmedcentral.nih.gov/tocrender.fcgi?journal=49&action=archive
BioMed Central Neuroscience
http://www.biomedcentral.com/bmcneurosci/
Spinal Cord
http://www.nature.com/sc/index.html
This journal is the official journal of the International Spinal Cord Society and often contains articles about neuropathies associated with spinal cord injuries.
Molecular Psychiatry
http://www.nature.com/mp/archive/index.html
Internet Resources
National Institutes of Heath
http://www.ninds.nih.gov/disorders/peripheralneuropathy/peripheralneuropathy.htm
The National Institutes of Heath has lots of material about peripheral neuropathy and other neurological disorders, as well as proving information about organizations concerned with pain management.
In addition to the site above NIH also supports access to research materials about a wide range of neurological conditions through Pubmed.
Pubmed
http://www.ncbi.nlm.nih.gov/sites/entrez
The above link is provided through the National Library of Medicine.
Associations and Foundations Devoted to Neuropathy
Foundation for Peripheral Neuropathy
http://foundationforpn.org
Jack Miller Center for Peripheral Neuropathy
http://millercenter.uchicago.edu/index.shtml
The University of Chicago has a center for peripheral neuropathy which has lots of useful information on its web site. The Jack Miller Center published several newsletters on neuropathy, though unfortunately there has been no recent newsletter in the series:
http://millercenter.uchicago.edu/newsletter/
Neuropathy Action Foundation
http://neuropathyaction.org/
If you click on the Neuropathy 101 menu you will links to downloadable materials which are helpful in getting insight into neuropathy. There are other downloads available via Patient Resources, and the links section has many useful followup items.
The Charcot-Marie-Tooth Association
http://www.charcot-marie-tooth.org/
The Charcot-Marie-Tooth Association provides information about hereditary neuropathies.
Hereditary Neuropathy Foundation
https://www.hnf-cure.org/
Guillain-Barré Syndrome and Chronic Inflamatory Demyelinating polyneuropathy
http://www.gbs-cidp.org/aboutcidp.htm
GBS/CIDP is a foundation devoted to Guillain-Barré syndrome and to chronic inflamatory demyelinating polyneuropathy.
Many articles (sometimes very technical) can be located and downloaded from:
Google Scholar
http://scholar.google.com/
If one does a search with the string:
"peripheral neuropathy"
or
+peripheral +neuropathy
one will find many items.
Resources Maintained by Support Groups
Northern California Chapter of the Neuropathy Association
http://www.pnhelp.org/
The Northern California Chapter of the Neuropathy Association's web page has a variety of information, resources, and newsletters of value to neuropathy suffers.
Desert Neuropathy Support Group
http://www.desertneuropathysupportgroup.org/DNSG_Home_Page/index.html
Commercial sites
Many commercial sites have useful information but one does have to remember that these are businesses trying to sell you something. You may want to do further research on other sites before making purchases. It is unwise to treat yourself for neuropathy. You should be under a doctor's supervision.
Neuropathy
http://www.wrongdiagnosis.com/n/neuropathy/intro.htm
Peripheral Neuropathy
http://www.wrongdiagnosis.com/p/peripheral_neuropathy/intro.htm
If you have suggestions for additional items to be added to the ones above, please contact me. My thanks to those people who have already done this.
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Version 1.26; September 15, 2020
http://york.cuny.edu/~malk/neuropathy.html